[Yvie Dee]

Re: ~*~Can you please share your story~*~

by Yvie Dee on Sat Aug 25, 2012 5:03 pm

Hi Lys.

After reading your story It confirmed for me why I remain quiet to my doctor about all the symptoms I go through one by one. I don't want my doctor to think its all in my head and start sending me on a wild goose chase going to see different specialists for each problem. That is a financial burden even with insurance. There are deductibles and co-pays. I know that keeping totally quiet isn't a very smart move either but I see that this disease is quite difficult to diagnose early. And I know 32 is very young to be diagnosed with multiple myelima but perhaps they need to change the fact that it isn't just 50 or 60 year olds that get this disease anymore. I don't think there should be an age on diseases anymore. I'm glad they finally diagnosed you after all you went through.

[lys2012]

Re: ~*~Can you please share your story~*~

by lys2012 on Sun Aug 26, 2012 10:21 am

Hi thanks for the support

Since my diagnosis my care was quick, and very good! My age actually made me a priority at the cancer hospital and I was put at the top of the line for a transplant bed when I was ready for my transplant. My specialist (who is head of the Myeloma clinic) doesn't keep that many patients on but agreed keep me on after my transplant so I have access the newest treatments if I relapses.

My family Dr. only had two other cases of Multiple Myeloma in her career, but she says since my diagnosis she has started ordered the SPEP test more often when pateints have these ongoing symptoms like dizziness, or headaches, and in one case a patient did have a protein spike, (which turned out to be MGUs) but the patient is now being followed. IN my case I likely started out with a MGUs spike, but over time progressed and kept progressing, if someone had ordered the SPEP test on my or even a protein test they would have found something was going on in my blood

I have my follow up appointment this week, so I always get a little worried this month will be the month I get bad news, but so far I keep getting good news

If you are not feeling well, or think you have myeloma symptoms as your family doctor to run the multiple myeloma tests including SPEP, and basic CBC bloodwork, and you can get a skeletal survey if you have back pain since it is just plain xrays and doesn't need to be done by a specialists. In my case both these tests would have shown multiple myeloma if they had been ordered.

[Kay]

Re: ~*~Can you please share your story~*~

by Kay on Tue Aug 28, 2012 1:52 am

>And I know 32 is very young to be diagnosed with multiple myelima but perhaps they need to change the fact that it isn't just 50 or 60 year olds that get this disease anymore. I don't think there should be an age on diseases anymore.<

In 1987 when I was 45, I started to have vision problems, migraines, motion disorder, nausea and had an MRI to check for Multiple Sclerosis or a blood clot. Nothing showed in the MRI and I was told MS was a remote possibility because I was the wrong age - either too young or too old. It took 12 years to get the dx for MS. I had many MRIs in that time frame but only of my brain; my lesions were in my neck when I finally had a cervical MRI in 1999. I have done every other day injections of an Interfron Beta-1b for 13 years now. My MS is well controlled; but if I had been diagnosed earlier and started the injections, I might have been able to avoid some of the symptoms that I do have.

In 2004, I had a bone marrow biopsy to check for a possible malignancy and was told that my pancytopenia (anemia) was due to the injections for MS. Last year, my GP said while he was ordering blood tests for my annual check up that he would check the MGUS also. This was the first time I was told that I had MGUS and after digging back in records from the clinic and hospital, I found out that the MGUS dx had been made in 2004. Who knew - certainly not me. Since that time, I have enrolled in the NIH natural history study for MGUS and have also seen a hematologist in Seattle and will be followed by a hematologist locally in between my visits to the NIH. I missed a section on the consent form for the NIH that said I would not get any genetic info; so that is why I am seeing a hematologist at home also. I'll have to have another BMB to find out the genetics of my MGUS. I have an abnormal K/L ratio and a few other abnormal results. Because it took 12 years to get my dx for Multiple Sclerosis, I am being more pro-active this time with the testing for MGUS to catch any progression in the early stages if I do progress.

Everyone needs to prod their doctors or find new ones when they suspect something is wrong. I went through 4 neurologists before I found one that really knew something about Multiple Sclerosis.

Kay

[blondie1746]

Re: ~*~Can you please share your story~*~

by blondie1746 on Wed Aug 29, 2012 12:19 pm

I was having some cramps in my feet and legs at night. That was the only symptom that I was really aware of. I was 49 and dreading the approach of my 50th birthday. Whenever I would be out of breath while walking, I chalked it up to being out of shape and getting old. In October, 2011 I finally went to the Dr. about the leg and feet cramps. He thought it might be "restless leg syndrome" but drew some blood to check things out. I also had a high blood pressure that day in his office, which is unusual for me. 2 days later he called to tell me the blood work showed my kidneys were failing and I needed to go to the ER immediately. After a second check of the blood work, they confirmed that my kidneys were indeed failing. They were only functioning at 8% of normal. Everyone was surprised that I was feeling fine and doing so well, considering how bad my kidneys were. I was told I would have to go on dialysis and that my kidneys would most likely not regain function. After a kidney biopsy, they thought I had "light chain deposition disorder." I was sent to an oncologist and we did a bone marrow biopsy. That was when I found out I had multiple myeloma. Later that month I had a catheter inserted in my abdomen and began peritoneal dialysis at home.

I had Velcade sub-q injections in November and December. I responded so well to the Velcade that I was a great candidate for SCT which I had in March, 2012. (I turned 50 just after coming home from the hospital.) Prior to the SCT my m-protein level was .3 At my 3-month checkup it had only dropped to .2. I was disappointed, but my Dr. assured me that this was a "very good response" and I was in remission. I just had my 6-month checkup yesterday and the m-proteins dropped to .1! I did not start Revlimid or any type of maintenance chemo after the SCT. Because of dialysis, I wanted to keep as much toxic stuff out of my body as possible. My Dr. agreed that we could go this route as long as the multiple myeloma doesn't show signs of returning. When it does, I know that I will have to go on Revlimid, but in the mean time, I am enjoying my life!!

[alaskanmeg]

Re: ~*~Can you please share your story~*~

by alaskanmeg on Wed Aug 29, 2012 5:52 pm

Last October I rolled over in bed in the middle of the night and in the morning I could barely walk. Went to the ER, x-rays showed nothing broken, but the ER doc did say, "Your pelvis looks like swiss cheese, it shouldn't look like this until you are much older." Next month, sudden intense pain in the same area, my groin. I think they did an MRI that time and they saw nothing. I was referred to an orthopedic surgeon, who found nothing. Now the pain was just a constant ache, for which they prescribed Tramadol. Meanwhile, I acquired a pain in my ribs where my bra lived. I discussed this with my oncologist, who I was seeing for Melanoma. It was noted in my chart, as had been the groin pain. Beside the dull aching pain, which made me stop wearing a bra, I was feeling great. Then in April after a year of no recurrence with the Melanoma, I had my last check-up. There was a substitute doctor instead of my regular oncologist. After I left the office, I got a phone call telling me that he wanted me to get a SPEP....and so the Multiple Myeloma journey began. I keep thinking about going back and telling the ER doc what the swiss cheese he was looking ended up being.

[Yvie Dee]

Re: ~*~Can you please share your story~*~

by Yvie Dee on Thu Aug 30, 2012 9:32 am

Hi Alaskanmeg. After reading your story I have to agree with you on going back to the ER doc to tell him exactly what it was. I would think he should've referred you to the oncologist or contacted your oncologist to discuss his findings. I wish you the best.

[alaskanmeg]

Re: ~*~Can you please share your story~*~

by alaskanmeg on Thu Aug 30, 2012 12:03 pm

and i was thirsty, constantly thirsty, like being in the middle of the Sahara thirsty all the time...still am

[lys2012]

Re: ~*~Can you please share your story~*~

by lys2012 on Thu Aug 30, 2012 12:07 pm

Hi Blondie,

my post transplant experience is similar after my stem cell my M spike was still 4! (I'm in Canada so that would like a .4) and then it gradually went down at 6 months was 0 and has stayed there for over 2 years!

I also chose not to do maintenence, in my case Rev would not be funded, only thalidomide, so the plan was I would not take maintenence but at the first sign of Mylema protein (greater then 10) I would start Rev. I was taking monthly pamidronate, but we have stopped that after two years of it so I am truly med free (well other then Famvir, which I will likely take for the rest of my life). Woo!

[blondie1746]

Re: ~*~Can you please share your story~*~

by blondie1746 on Tue Sep 04, 2012 3:35 pm

Lys, that is great news! I really am hoping to be outside of the norm when it comes to remission and Revlimid. I keep telling myself that those are averages and I am not average! There is a person on Pat's multiple myeloma blog that posted they have been 4 years in remission without maintenance chemo. I think I'll shoot for that (and maybe beyond!). My bigger concern could be the dialysis. It can be very hard on your body. So, I am trying to eat better and exercise more to stay as healthy as I possibly can. Good luck to you!!

[JBarnes]

Re: ~*~Can you please share your story~*~

by JBarnes on Thu Sep 06, 2012 1:00 pm

I'm 54 and can count on one hand the number of times I went to the doc prior to this year. After much pestering from my wife I went in for a full checkup in March of this year. Everything was perfect. In June I had a staph infection hit me along with annoying back pain. They treated me with antibiotics for the staph did a MRI of my back and said I had a bad disc. Staph infection would not go away, walking became difficult so my ortho doc who was treating my back did a MRI on my pelvis. Doc calls me 15 minutes after I have the MRI and bingo, numerous tumors on my pelvis. Scheduled a visit to my GP (same day), does a urgent blood test and calls me back that evening confirming protein levels are high. He schedules a appointment with oncologist for me. 24 hour urine test, marrow biopsy and I don't how many blood tests. All this happens in a 3 day period. Couldn't ask for better care. Both docs called me at home (in the evening) to check on me. So, between March and June I got cancer. Blood work in March was perfect.

I don't know results of testing yet. Have that meeting tomorrow. Jerry.